Alex Lowery speaks about autism

‘You don’t look Autistic – my internal dialogue’ by Katy Gough

Written on 25th Aug 2017 by Alex Lowery

Today we have a guest article by Katy Gough. Katy is 20 years old and was diagnosed with Asperger’s Syndrome at the age of 18.  She has an excellent YouTube Channel where she raises awareness and acceptance of autism. You can view the link to this Channel here. The article is about the commonly used phrase, “You don’t look autistic” even though autism has no set look. This is a phrase any of us on the spectrum have experienced. I’ve even been told it myself several times. People tend to have a very set idea of what autism looks like which doesn’t apply to all cases of autism. I hope you enjoy the article!

Photo 12-05-2017, 19 01 53If I had a penny for every time someone has said this to me, my savings account would be bursting (I’m too indecisive to decide what I’d spend it on!). But my fantasy of infinite riches comes to an abrupt end when I remember that I’m expected to respond.

I stick to what I know – the facts! I start to reel off the same script of how females on the spectrum aren’t what society expects and that they often go undiagnosed.  How our social difficulties are overlooked and how we get by through mimicking the social skills of those around us.  

But in my mind, I’m adding to my tally of people who’ve responded this way. Drawing another thick black line on the whiteboard (I’ve never been one for chalkboards!)  in my mind and trying to figure out what is this ‘look‘ that people expect Autism to have?

However, I don’t have to ponder on this for too long because ‘You don’t look Autistic’ is quickly served up with a side of ‘You look normal’ and this is where I find the answer to my question. Oh! So you expect me to not look normal! But then how do I respond to this? Am I expected to apologise for looking normal? For not being as you stereotyped me?

I came to the conclusion a while ago that this is probably meant as a compliment – a pat on the back for blending into society. I attempt to laugh it off or force a smile as a way of diffusing my disappointment that yet another person is congratulating me for conforming as if it is a crime to look Autistic.  

My thoughts quickly turn to the real lack of understanding of the Autism Spectrum.  Asperger’s Syndrome is a form of Autism in which that person may experience everything that those with ‘Classic Autism’ experience. The only difference is that those with Asperger’s will not have the delay in language development – quite the opposite actually. I can only assume that ‘You look normal’ is the polite way of saying ‘You’re too high-functioning to be Autistic’.  I sigh. Those on the spectrum can’t hold a job or travel independently without being accused of being ‘too high-functioning’ when instead they should be congratulated for overcoming such hurdles.

But I realise that I can’t blame society for being confused by my sudden change from being very high-functioning to then being what is considered low-functioning. But that is the nature of the spectrum and here lies the confusion. People assume that once you’re placed on the spectrum your position is fixed, when in fact we are constantly moving. You can go from feeling invincible because you made it to the shops, to feeling overwhelmed because your particular brand of bread was out of stock.

I often find myself feeling like I have to justify my functioning levels. When the ‘You don’t look Autistic’ comment rears its head, I feel obligated to list every way in which I really am on the spectrum. The temptation is even greater doing the job that I do. Putting my life on YouTube leaves me subject to abuse and ridicule and it’s hard to ignore the temptation to prove these people wrong.
‘You’re not autistic because you have tattoos’
‘If you were really autistic, you wouldn’t be able to make videos’
‘You have photos of your friends in your room – you can’t be autistic’
I bite my tongue (or my fingers if it’s online). I wish I could send my medical records to everyone who doubts me and say ‘Here’s your proof!’ but it’s taken me nearly 3 years to realise that I don’t have to justify my Autism to anyone.

photo 1I take a deep breath and remember why I started my YouTube channel in the first place. I wanted to create a community that I wish I had had when I was first diagnosed. To bring light to the side of the spectrum that is rarely portrayed and to show people that Autism doesn’t have a look. This is my motivation on the days where the negativity is all consuming and the reason I continue as an advocate.

It highlights the issue we have in today’s society when it comes to disabilities of any kind – if you’re not at the ‘severe’ end, you’re never instantly accepted. Those with depression are seen to be lying because they can get out of bed to take their children to school.  And those with Autism who are verbal and can be somewhat independent are accused of being ‘too normal’.

Severity has become a contest, a means of separation amongst communities. I think back to the times that even others on the spectrum have questioned me. Admittedly, these are mostly people with a lack of knowledge of how we as females on the spectrum can differ from the more widely accepted male symptoms.  But it still dampens my hope of change when I see such division within our community. How can I expect society to understand when some of my own community don’t?

I’ve started blaming the media for this. Films, TV shows and even documentaries often portray Autism in a 2-dimensional way – like we’re as flat as the screen you’re watching it on. It leaves people on the spectrum being ridiculed for not being Rain Man. We must all be obsessed with something unusual and know every number in the phonebook off my heart. We must either struggle or excel. Never just average. Never just normal.

I draw a horizontal line on my mind’s whiteboard, the word ‘Normal’ at one end, ‘Autistic’ at the other.  Why are they seen to be opposites? I’m stuck in a world where society pressures me into being normal but at the same time, accuses me of dishonesty when I am. My life feels like I’m attempting to mix oil and water and I can’t help but get frustrated. I’m trying to fit in whilst having to justify why I stand out. I get angry. I have difficulty expressing my emotions… Fact! However that doesn’t mean I am devoid of any.    

My thoughts begin to slow down and I slowly return to the conversation at hand. The pressure of a response still weighs heavily on me and I reset back to my default – to avoid any confrontation. I leave my emotions in a confused pile by the side of my whiteboard.  I smile and respond with the safest option…‘I hear that a lot’.



3 thoughts on “‘You don’t look Autistic – my internal dialogue’ by Katy Gough

  1. Brynne says:

    As always, Katy, well said! I couldn’t have put it better.

  2. Alan Foulkes says:

    Wow. Thank you for that Katy. Really made me think.

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Organisations Alex has worked with

  • Autism Cymru
  • Chester University
  • Glyndwr University
  • National Autistic Society
  • St John's Ambulance
  • Welsh Government

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